Take our poll: Caregivers, what do you find most difficult about caregiving?
Weigh in: What are the best and worst gifts for people with breast cancer?

Ibrance (Palbociclib)

1…288289291293294…945

Comments

  • Dianarose
    Dianarose Member Posts: 1,951
    edited July 2017

    I had an IV of magnesium and potassium this week and my numbers on those were fine yesterday. I do take supplements as well.

    My right kidney isn't draining. Hubby changed the dressing to make sure there was no kink. Lots of flank pain on that side. Even if I went to the ER they will not help as it's the dam weekend again and aren't staffed for this problem. Either there is something wrong with the tube on the inside or something very wrong with that kidney .Dont even know what to do

  • intolight
    intolight Member Posts: 2,387
    edited July 2017

    Jaycee, lymphedema was the first thing I suggested to the Dr but he said it usually affects the whole arm and mine isn't (although it is spreading). I was a little frustrated that my onc sent me to my GP as I am sure she would recognize related issues. Also, I have never had any surgery so my nodes are still intact. I am guessing the lymph nodes have grown and thus the blockage. I guess I will find out after my scan on Tuesday. I see my onc a week after. I sent another note so it is on my record. Thanks for the response.

    Chris

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited July 2017

    Dianarose, is a MO/NP/ or PA in your clinic on call for weekends? Seems you need some immediate attention or advice on how to proceed, like hospitalization. Which means..going to ER first. Maybe the on call MO will meet you there?

  • chicagoan
    chicagoan Member Posts: 1,061
    edited July 2017

    Dianarose,

    I second Sandibeach's encouragament to get some medical input-the lack of drainage sounds pretty serious. I know you don't want to go back to the hospital but hopefully you can get ahold of one of your doctors for some advice.

    As to your question about Iron-I tend towards anemia and started taking the CVS version of Slo-fe and it seems to help. It's easy on my body and helps with the fatigue.

  • Dianarose
    Dianarose Member Posts: 1,951
    edited July 2017

    At ER in horrible pain. About 30 people ahead of me. It's

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited July 2017

    Dianarose. Who handles your kidney issues, MO or a urologist? I would definitely call one of them and talk to the answering service and have the doctor contact you so you can report this issue right now. You shouldn't wait until Monday. If you can't get responses from either of those doctors, go to an ER at the nearest large hospital or medical center where they are staffed to handle such situations on the weekend.

    Lynne

  • faith-840
    faith-840 Member Posts: 926
    edited July 2017

    Dianarose, I pray you've found some relief by now. I can't imagine what pain you must be in, not to mention the worry too. You will certainly be in my prayers.

    Faith

  • zarovka
    zarovka Member Posts: 2,959
    edited July 2017

    interested in the bone loss discussion. 18 months on letrozol and Ibrance. No bone loss meds yet but last xray for bike accident showed bone loss in hip and knee.

    Z

  • zarovka
    zarovka Member Posts: 2,959
    edited July 2017

    DianaRose - hope you are more comfortable as I write. Sending hugs. Must have been an awful awful day. HANG IN THERE.

    Z

  • faith-840
    faith-840 Member Posts: 926
    edited July 2017

    Z, I've also been on these drugs as long as you and my MO has never discussed bone meds. I'm not anxious to start another med but I do worry about falling and breaking something. At my age, a fall can be the beginning of the end.

    I hope you're on the mend from that bike accident. Did you take any OTC meds for pain. I'm in need something right now for this plantar faciitis and also for sinus pain. Tylenol or Motrin does nothing for me and we are not a green state yet as far as I know. I took an Aleve today and it helped but I'm not sure if it's ok to take with the Ibrance. MO did say a few Motrin were ok but they don't help. So do you or anyone else here have any ideas besides ice and stretching for the feet, and ice for my head?

  • zarovka
    zarovka Member Posts: 2,959
    edited July 2017

    I had a rib bruise and a badly sprained wrist. I have been takiby a strong prescription anti inflammatory plus a muscle relaxant per the urgent care doctor who patched me back together after fall. He knows I have cancer. Knows I am on letrozol and ibrance. Nothing contraindicated in the old database... so we just did it. No permission from onc... who would just search the same database.

    Worked well. Basically I think antiinflammatories help fight cancer. No idea what muscle relaxants do for cancer .. but they allowed me to breathe for the last 3 weeks so yay.

    Will be able taper off in the next week.

    Z

  • intolight
    intolight Member Posts: 2,387
    edited July 2017

    DianaRose, I have been praying for you all day. Sounds like it was a horrible experience. Hope you are doing better and received the proper help.

    Faith, I was put on bone strengthener from the start because I had extensive bone mets which it looks like you don't have. I immediately stopped riding my bike and my DH won't even let me climb up the step stool. But I do tend to take things to the extreme... I have not had extreme pain so I can't help you there.

  • micmel
    micmel Member Posts: 10,057
    edited July 2017

    Diana~I am holding your hand in spirit and thinking of you and praying all night and day. I adore you my friend!💕💕 I'll be waiting to hear you're home again. Please have DH. Keep me posted. Please. So worried !!!😰

  • nonahope
    nonahope Member Posts: 695
    edited July 2017

    Dianarose...I hope you are home and on the road to recovery. I can't imagine the misery you've been in. Praying for you!

    I will be on monthly infusion of Zometa for bones. My onco was adamant about this. He told me it was most necessary to keep my bones strong. I was on Fosamax for 5 years, while on Arimidex. I have osteopenia and he wants me to hopefully stay in that range, rather than have full blown osteoporosis...apparently, the Letrozole does a number on our bones...just like Arimidex.

    Yesterday was my second day of "no" Ibrance. Still felt queasy on and off all day and no energy. I'm thinking it's more anxiety than anything. We'll see how today goes.

    Does anyone drink bone broth? It was suggested to me. I bought a box of organic grass fed bone broth. I will try it today. If I can stomach it, I will make my own...but thought I'd give it a try first.

    Faith...I was given a prescription for Tramadol for pain. It doesn't work any better than extra-strength Tylenol. So, I seldom ever take it.

    Off to eat a bit of breakfast...oh, how I wish I was hungry!!

    Hope

  • proudtospin
    proudtospin Member Posts: 4,671
    edited July 2017

    hope, well hello there. Sorry to see you. Sounds like we have both progressed and not in a good way


  • Topaz122
    Topaz122 Member Posts: 12
    edited July 2017

    Thank you Jaycee49. I got lost in the forums and just returned so delay since your response. I was put on Letrozole but had a bad reaction to it so taken off. Next step was to put me on Ibrance 125 mg. as previously mentioned along with Anastrozole which I had been taking for a year. The Anastrozole daily pill replaced monthly shots in each hip after nurse hit a vein and I ended up in the ER. My concerns as far as SEs on 75 mg. of Ibrance are the edema in feet and legs and fatigue. The hair thinning doesn't thrill me either. Does anyone else get daily edema, even on the 7 days off? I don't work so I can take a nap anytime and it never causes a problem with night sleep. I take my Ibrance after lunch as I have other meds to take after breakfast and dinner. I have never lost my appetite, but don't ask me to be a critic using my nose.

  • melmcbee
    melmcbee Member Posts: 371
    edited July 2017

    Diana I am sending prayers and hugs.

  • Topaz122
    Topaz122 Member Posts: 12
    edited July 2017

    Hello Sadiesservant,


    I too am SOB which I think is due to low hemoglobin. Having been a go-getter all my life it is hard to slow down. The edema in my usually slender ankles and feet also holds me back.I have a cruise to Alaska planned with a friend in early September and was deciding on side excursions. I was looking at the exercise level and even figuring how close ship docks to the buses.

    Do you think the doctors accept SOB as an acceptable side effect?

  • nonahope
    nonahope Member Posts: 695
    edited July 2017

    Iris...I'm so sorry to hear you are in the same boat. I hope your treatments go well for you. Anxiety is my middle name, but hoping to have better days as time goes on. Just hard to wrap my head around this diagnosis when you know there is no cure...it truly is "one day at a time".

    Topaz....This is my first round of Ibrance 125 mg/Letrozole. I haven't experience any edema. I see my onco on Thursday. I'm wondering if I will be on this same dosage or maybe change to lower dose. I haven't noticed any hair thinning yet.

    Hope

  • proudtospin
    proudtospin Member Posts: 4,671
    edited July 2017

    hope, it sort of shocked me also

    I was on a chemo pill for three months and it failed me, now i am on taxol which is am infusion, weekly

    Good luck to you, this is a good group with lots of information and support, me just dealing with hair loss this week

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited July 2017

    Hi Topaz,

    I think the edema is from the Anastrozole. I also have it and it is a listed side effect. As to the SOB, my hemoglobin kept getting lower and lower on my last cycle but my MO indicatedit was not low enough to cause me any problems. It turns out I am dealing with an infection in either my lung or my pleural space. They have me on antibiotics but it looks like they are nor working. I'm beginning to wonder if I have pneumonia as the last chest x-ray indicated areas of consolidation. This might explain the spikes in fever, SOB and other symptoms. Will be checking in with docs tomorrow as I think I need some blood cultures to figure out what is going on. Just tired of feeling crappy at this point....

    DianaRose, sending gentle hugs and hoping that you got some relief and are home again

  • nonahope
    nonahope Member Posts: 695
    edited July 2017

    Iris...Yes, I have learned a lot from these gals who are doing this same treatment. Sorry the chemo pills didn't work for you. I will have a scan after 3 months....praying it's working. My onco seems very positive...we shall see. The thought of having to go through chemo infusions again would be a real downer. Hang in there.

    I tried "bone broth" for the first time. I didn't care for it, but it wasn't as bad as I thought it might be.

    Hope

  • proudtospin
    proudtospin Member Posts: 4,671
    edited July 2017

    hope, i did somethiing called afinitor, it bombed for me, hoping yur med does the trick for you

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited July 2017

    Topaz, I had to go look up the post you were talking about. I forgot completely. My feet seem swollen to me when I get ready for bed. MO only checks ankles for swelling when I see him. I wonder if that contributes to the foot pain that is keeping me awake until all hours. I'm operating on about 5 hours right now so I hope this makes sense.

  • micmel
    micmel Member Posts: 10,057
    edited July 2017

    Hi guys! Dianarose is finally home from the hospital and is too tired and in a tremendous amount of pain. She asked me to give you an update. She feels exhausted and needs some good rest. Her pain levels are off the charts. The hospital really made her wait and she was in pain the entire time. She's at her wits end with them finally they figured out the last tube had been inserted wrong. So they allowed her to suffer with that all night until they finally replaced it with a new correctly placed tube. Let's say some more prayers for her. 😞 She's been through such a hard month. She deserves a break from all of this crap. And they need to get their crap together at these hospitals. We are people not Guinea pigs!! God bless you my friend. And you lovely ladies as well! (💕Dianarose). Hugs ~M~

  • Debrasteve1
    Debrasteve1 Member Posts: 1
    edited July 2017

    Has anyone had a pleural effusion while on faslodex and ibrance? I have breast cancer and it metastasized to my bones and chest lymph nodes. Been on ibrance since February. The Doctor stopped my Ibrance and I get the fluid drained tomorrow!

  • Topaz122
    Topaz122 Member Posts: 12
    edited July 2017

    Hi,

    I wish my feet and legs only got swollen at night but I start out in am with no swelling, have a couple cups of coffee, usually oatmeal with blueberries and voila! I'm swollen. Last alls day and into night. I do get my feet up in afternoon for a couple of hours but it doesn't take away the swelling.

    Topaz49

  • faith-840
    faith-840 Member Posts: 926
    edited July 2017

    Micmel, thanks for letting us know Dianarose is home from what is apparently a joke of a hospital. I can't believe they let her suffer like that and who is the "doctor" who put the tube in wrong? This stuff makes me so angry. Please tell her she is in our prayers and we are so relieved she is back home.

    I also have swelling in my feet, but I think some of it is also caused by my blood pressure meds. I have started wearing some compression hose and it helps if I'm on my feet a lot. The standard treatment is to reduce your salt intake but that's not an option for me as my sodium is always low from all the water we are supposed to drink. My MO would rather have some swelling and keep my sodium levels up, since low sodium can cause confusion and lots of things. There sure is no free ride with any of this stuff. I know we are lucky to have Ibrance but some days I'd like to throw the bottle away. I actually skipped taking it yesterday and took an Aleve for pain and everything felt much better after that.

    Gentle hugs and prayers for all, especially Dianarose.

  • vancouverdeb
    vancouverdeb Member Posts: 30
    edited July 2017

    Micmel, thanks for the update..... hugs to you, Dianarose - so sorry that you're in so much pain & hope it gets better soon.

  • zarovka
    zarovka Member Posts: 2,959
    edited July 2017

    thinking of you dianarose.

    Z

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.